e-Patient Dave

Power to the Patient!

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A dermatologist responds: “Who the heck is charging $3000 for Mohs first stage?”

Well, that’s not exactly what he said. And I’m not even sure he’s a dermatologist, though it sure sounds like it.

For newcomers, this is the latest in a four month saga, including these posts:

Today (Saturday 6/16) on the “decision” post, commenter “Joe” (apparently a dermatologist) said the most interesting, thought-provoking stuff I’ve ever seen anywhere about basal cell carcinoma treatment options:
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Information, at the point where it’s needed, can save a life

At the Joseph H. Kanter Family Foundation’s Learning Health System Summit, at the National Press Club in Washington last month, I was asked to deliver a dinner speech about the power of information to improve the effectiveness of medical care – not just for patients, but for every doctor and nurse at the bedside. Because everyone performs better when they’re better informed.

Important: This was my first major speech that’s not about patient engagement per se – it’s about the value of information, to everyone engaged in any aspect of health or care.

Clinicians, policy makers, everyone can only perform at the top of their training if the relevant information is available where and when it’s needed. That’s IT, baby – information technology – but it’s also culture. We need the will to bring the info to the point of care – and to put an end to information that dies on the vine, unused. We can do it!

If you can’t see the video, click here to view it directly on Vimeo.

About the event:
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Raw numbers for treating my basal cell carcinoma at three hospitals

The morning-after edits, originally marked in italics, have been “accepted” (to borrow Word’s term) to show the final text.

Here are the results of my cost shopping research to get my skin cancer (basal cell carcinoma, aka BCC) removed. The first edition was done in a hurry because the #bcsm (breast cancer social media) Twitter chat was happening, discussing costs and shopping, and they asked to see it.

It started in February when I decided to be proactive about finding out what this would cost me. I have $10,000 deductible insurance, so this is all coming out of my pocket. In previous months I’d gotten sick & tired of getting unexpected medical bills, and people at the hospital and insurance companies having wrong answers or no answers about “What’s this going to cost?” (CT scan, shingles vaccines)  So, this time I published an RFP (request for proposals), the same way any business would do when making a substantial purchase decision. The RFP started:

Summary: I seek a care partner to remove a basal cell carcinoma (BCC) from my left jawline, under the ear. For a brief introduction, see blog post and photo (low quality) at http://bit.ly/ePDaveBCC.

I’m educating myself about the condition, I want to explore the available treatment options, and I’m “shopping” for a partner to do the work and follow-up with a good combination of quality, partnership, and cost.

It was a crazy thing to do, because hospitals don’t have RFP response departments (as many businesses do), and I was sure my request was largely uninformed. But I sure learned a lot from the comments on that blog post.

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Dartmouth Summer Institute for Informed Patient Choice: Who can fix health care? Let patients help!

Click to visit SIIPC siteI’m speaking this morning at the Summer Institute for Informed Patient Choice. It’s a big-deal event in the world of Shared Decision Making (SDM), a topic I’ve written often about on this blog and on e-patients.net.

Here are links to resources mentioned in my talk.

  • TEDx videos: “Who can fix health care? Let patients help.” It amazes me that the two of us knew nothing about each other’s talk, but these talks fit together as if they were choreographed:
  • Engagement Behavior Framework from the Center for Advancing Health (CFAH). This model, announced in May, is valuable as our movement grows: “Okay, we agree that it’s good to have engaged patients. What specifically does that mean? How can we get to work?” CFAH’s framework answers it:

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Announcing: e-Patient Boot Camp!

Patient engagement is reshaping healthcare. Learn how. Learn why. Learn what to do.

I’m thrilled to announce the Next Big Thing (for me anyway!): a full day workshop for doctors, patients, businesses, investors, governments – about the e–patient movement. I’ll deliver it anywhere there’s an audience.

Born of the constant encouragement people have given, it will be launched next month in Silicon Valley. Visit epatientdave.com/bootcamp for the full story.

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“Back to the Future: Doc Tom’s e-patients emerge in shared decision-making” (post on the BMJ blog)

Visit the post on the BMJ blogI was honored (okay, thrilled) to attend last week’s Salzburg Global Seminar on healthcare, titled “The Greatest Untapped Resource? Informing and Involving Patients in Decisions about Their Medical Care.” (I mentioned it last month, writing about a historic Salzburg Seminar in 1998.)

This time more than fifty participants from fifteen countries met for five days to learn about SDM (shared decision-making) and related subjects, and discuss how we can change the culture of healthcare. I got the chance to address the group for 15 minutes one morning (that was fun!), and was invited to contribute thoughts for the blog of the British Medical Journal. “Doc Tom” Ferguson, founder of the e-patient movement, wrote several things for the BMJ, so I decided to tie this event to that precedent. The resulting post is here.
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